Imagine you've been diagnosed with an incurable genetic disease and you are told you will not only lose your ability to walk and move your arms, but you will die between now and the next 18 months. What would you do?
My name is Avery Lynn Canahuati, I'm almost 5 months old, and this has become my reality. But before I die, there's a few things I'd like to accomplish...this is my bucket list and my story.
SHARE IT & HELP ME TELL THE WORLD ABOUT SMA!

Wednesday, May 2, 2012

Avery Lynn Canahuati - 11/11/11 - 04/30/12 (quick update)

Please remember, just because Avery is no longer here doesn't mean we can't continue to learn from her. So as Avery would urge you to do at the beginning & end of all her posts...

"Each time I post an update, please share my story by updating your social networks, e-mailing all of your contacts, and talking to your friends/co-workers. And to all my girlfriends out there, tell your Ob/GYN about my story and maybe they'll routinely start offering SMA testing. If we can help save a few of my future friends and their mommy, daddy, and loved ones from SMA, then my life, while cut short in time, will be beyond fulfilling in stature."

Just a quick update to one of Avery's last Bucket List goals...

An anonymous donor will match every dollar donated up to $500,000 to help bring Dr. Kaspar's SMA Gene Therapy program out of the lab and into her SMA friends. Dr. Kaspar's SMA Gene Therapy could cure Avery's friends or at the very least offer advancements towards a cure for them.

Once that goal has been achieved, Avery asks that all future monetary donations be made in her name to Fight SMA (www.fightsma.org).

and remember...

"We are all born pure & innocent. We can let the world change us, or we can change the world."

-My Daddy-

Don't forget to share my story by following & forwarding my blog, following me on Twitter (AveryBucketList) and Like Me on Facebook (Averys Bucket List)! While it may or may not help me in my lifetime, the more people who are aware of SMA, the less likely future children will be born with SMA, and the more likely there will one day be a cure for children who already have SMA!

I just learnt about Avery's story yesterday and spend a large part of my day reading her wonderful blog and crying. You have handled it beautifully and are doing a great job at raising awareness. Thank you so much for sharing your story, and showing everyone how to be so strong. I am so sorry for your loss, but you obviously know that it has not gone unnoticed.

I'm the father of six, my latest daughter Claudia was born too in November 2011, on the 29th, 18th days after Avery. I'm feeling so close to you both as parent. God bless your little angel and will surely help you spreading the word.Be strong with much love,Paolo, an Italian father

me and my friends are raising money in avery's honour soon by selling sunflowers. we will donate all the money to fighting SMA. thank you for all your posts, and I will continue sharing them. avery was really brave and taught lots of people to keep smiling.

You are an amazing father and Avery and all of her friends are so lucky to have you. Babies will continue to smile for Avery on BabyCenter. Your family has truly inspired and changed the world for the better

Hi Mike & Laura - Thank you for sharing Avery with us. I've made a contribution to Dr. Kasper's gene therapy and hope that you will continue to blog and keep us up to date on progress. If there is anything else i can ever do please don't hesitate to ask. I'm 20 minutes from you guys and would love to help.

My little boy was born 11/3/11. I have a 4 year old super star princess as well. Every day, I will strive to be a better parent. Work towards leading them and enriching their lives no matter what the world has in store for us. You have inspired so many and have captured my heart.....I will think of your "Scuttlebutt" often and always

Bless your hearts Canahuati family! Avery was just as lucky to have you as you were her. Thanks for sharing her and her story with us and for bringing SMA awareness to us all. We shall all fight for it's awareness for Avery and her smile that never ended. May she watch over and take care of you now, as you so lovingly did for her.

Thanks for sharing Avery with the world! Her life was short but she left a lasting impression. Again, I am so sorry for your loss. May you find the strength needed during this difficult time. I have shared the information regarding the donations and will continue to share her story to increase awareness! There are thousands of Houstonians behind you, you just make the call and we will unite to help!

Where to begin.. Avery was BLESSED to have you in her life as you were to have her. You're amazing parents for doing all those special things for her and for letting the world know about SMA. Thank you for the knowledge.. I just found her blog today and i am sorry to hear of her passing. I shed a tear for Avery but i laughed a lot and smiled pleanty at her blogs. The first thing i want to do when i get off here is call my insurance company!!! I would never be able to afford IVF.. but knowing is half the battle. I have a little boy who is healthy and this blog has made me realize not to take that for granted!! I rush home to hug him every day and am sad to leave him every morning so thank you for making me cherish those moments that much more!

You're true inspiration and Im sad i didnt get to tell Ellen about Avery's story yesterday but I'm still going to in hopes that SMA will be made public and known about for screenings before you decide to have a child!!

I will continue reading and I pray for peace, strength, hope and love for your family in this time and forever more.

I just wanted to say that after reading this story Baby Avery isn't gone. I believe there is now a piece of her in everyone that had read your blog. May u have piece in your hearts knowing that her memory will go on.

On Saturday May 5th, we have a large group of runners who are participating in the Door County Half Marathon and 5K in honor of a medical missionary who provides surgeries to the poor and sick of Haiti.

I will be donating my $200 to your cause instead of my own and will be dedicating my run to Baby Avery. My t-shirt will still say Haiti: Together We Move, but I will wear a bracelet in honor of Avery and will encourage the rest of my group to do so.

You made me cry in the middle of Sam's Club when I heard about your daughter's passing. I truly believe from the bottom of my heart that the worst thing that could ever happen to a parent is to lose a child.

I am honored to help Avery cross the following off of her list: Run a 5K (I'll be running a half marathon, but other's from our group will be doing the 5K) and maybe even walk for a cause since some of our group will be walking the 5K.

You are an inspiration to all and someday when you are ready, I cannot wait to hear about the birth of your next child. As a mother to 4 girls, I hope it is another beautiful baby girl.

The strength and courage that your family has created with such a tragedy is not only unselfish and beautiful, but it is inspirational worldwide. I hope you realize that you are changing the lives and hearts of people who never expected something like this to take them by such a storm. As you said, "We are all born pure & innocent. We can let the world change us, or we can change the world", I believe you are well on your way to changing the world. You've already brought millions of people closer based on one beautiful little girl. Avery will live through you. Lets make her proud!

Today I was battleing my own issues. Today I'm going with my 19 year old daughter to see if she is pregnant. I was mad, hurt,and disapointed untill i read about Avery. How life can change in the blink of an eye. I'm now ready to face what ever God has in store for my daughter. Thank you for sharing your story with us. May God hold you in his arms through this and whatever else you may have to face.

Avery made page one of msn news!!! and she also was on morning express with robin meade. I also found this link for those of you wanting to know more about the gene therapy http://www.fsma.org/Research/GeneTherapy/

Thank you for sharing your beautiful daughter with the world. She has changed so many lives already, and potentially so many more with research and treatment of SMA. God bless you all as you continue to live life to the fullest -- Avery was blessed on earth and is blessed in heaven to have two loving, creative and AMAZING parents like you.Love and Prayers,Jessica in PA

I want to pass along my love and support as you go through this time. My sister was diagnosed with the same 25 years ago. I was 5 at the time. I remember the two year limit on her life, and fearing every day with her would be my last. 25 years have passed and there isn't a day that goes by that we don't feel blessed she out lived that diagnosis. Right now may been too soon to look for comfort in those that have survived, just as I can not read your blog yet as it breaks me down. Linzey's life has inspired many as she runs a service dog org to help others now. Avery has done so much in her short life, she is a kindred spirit along side my sister.http://quest.mda.org/news/trainer-sma-turns-underdogs-winnershttp://padcentral.org/about/

Are you from another world. WOW! What amazing parents/people you are. Thanks for sharing all these memories. People like you are the people that change the world. May you find comfort that one day you will be a part of saving many lives. Thanks again! You are an inspiration to us all.

i cant believe what am reading still. i just found out about Avery's blog and now this???? i know this is not God Fault or anyone's fault but why? why? Little Avery Angel left us way to soon, yet i believe one day i will get to meet you up there Avery. Your mama and papa are the best. God Bless little girl, rest in peace. We all love you down here on earth.

I have taken the time to read Avery's blog. THank you for sharing such a beautiful soul with the world and raising my awareness for this disorder. As I have read this morning, I keep watching the counter for page views spin and increase at an incredible rate. Avery has certainly touched the world.Thank you and God bless you.

I am so sorry for your lose and could never imagin what you must be going though. I am a mommy to four wonderful children and am inspired by Avery's story. We learned about her story at the Skeeters game on Friday and we are heart broken to hear she has passed. You are truely blessed to have the support of your family and friends around you and your faith in God!!! We love you and keep spreading the word!!!!

You are not alone, and what you did here is very touching. I wish I would have know about it earlier. We lost our two daughters to CDG, http://www.cdgs.com/ it is another genetic disease. Zoe was lost to us in February she was almost 19 months old and Sarina in August, we enjoyed her company for 2 years 5 months and 9 days. Some days are harder than others but do not worry that you will forget her, you will always remember her. Draw strength from each other and it is ok to weep. Some days the memories will hurt and others will make you laugh. Remember the good times and the bad. Life goes on and so must we. Thank you for doing this.

My husband and I send our prayers that you find peace and are someday able to celebrate the joy she brought to your lives and so many others. Your daughter's life here on earth meant something - her time here was too short but was not in vain. You two are doing wonderful things in her honor and in her memory, even through your pain, and I deeply admire you for that. Thank you for reminding me that every day is precious. My husband hasn't cried more than once in the 12 years I've been with him, but he cried yesterday watching your wife and your daughter at their 'tea party'. We kissed our almost 1 year old extra times last night before we went to bed. Thinking about you always and sending love from out West.

Thank you for sharing Avery with us. I have taken notes from your blog especially about changing the world instead of letting the world to change us. I am a mother of 3 kids and wanted to cry at work as I saw the pictures and read the story. May God give you and your family strength as always during this most difficult time.

I just saw the MSN headline and somehow wasn't surprised when I saw you lost your precious little girl to SMA. Our first child died from complications associated with Type I 7 years ago at the age of three months. We had never heard of the disease until he was diagnosed. Your loss is tremendous, and it will be lifelong. But we learned that with the capacity to endure deep sorrow there lies the capacity to experience great joy. That is our hope and prayer for your family.

Dear Avery & Canahuati Family, Thank you for teaching me so much throught that blog. I am French and it has been such a real pleasure to follow all the adventures of Avery while learning A LOT about SMA.

I didn't know anything about SMA before reading your story. Avery,touched the heart of all the people that once heard her story but what she's done best is to make us conscious that things has to change and that together with her we have to stand up and like her aware the world about SMA, so all together we could help all Avery's friends by finding a cure.

Hearing the sad news that she passed away broke my heart into a million of pieces because throughout the short time I've read her blog she always succeed in putting a smile to my face. and I want to be sure that you know that I am truly sorry for your loss and that all my thoughts and prayers go to you and your little angel.You are an awesome family and Avery has been so lucky to have you as parents during her short journey on earth and even if she is missed by everyone that knew her or heard about her and that she certainly miss you where she is. We now have the most beautiful and shinning star up there to show us the way, so I am more than confident with the fact that we one day find a cure for all the kids and people with SMA.

We are so sorry for the loss of your little girl. Our little one is just a few weeks younger than Avery and we can’t imagine going through what you are going through. Just wanted to thank you for sharing her story and her beautiful smile. We made a donation and we'll keep you all in our prayers.

The entire Canahuati family is unbelievably amazing. Thank you for sharing glimpse into Avery's life with us. What a beautiful life. Her smile lit up room, I have no doubt. I'm so saddened by her passing, I truly believe god works in mysterious ways, for reasons unknown to us. Avery had a purpose, a purpose I think we all know. I know as her parents you both were chosen very carefully and as myself and the world can see ya'll have been very inspiring.

I unfortunately know the pain of loosing a child, It's a difficult thing to experience. I wasn't sure I'd ever move on from the passing of my son. But I really put it into gods hands and he gave me the strength to move on and since has blessed me with a daughter.

My little brother and best friend was murdered in 1997 he was only 14, another dark time in my life. Him and i talk all the time. I find comfort in him, he helps me so much. We've talked about Avery.... He said he's going watch her and take care of her .... Make sure she's never lonely.

my son Chandler was born with a rare genetic mutation of the gene flna. There is not much know about it at all. He has multiple issues. They think he.will pass soon is eight months today. They said before a year. He had strokes while i was pregnant. Which killed over half of his brain. He has seizures now which is killing more. He is deaf,blind,an will never walk talk or eat on his own. He has a trach an feeding tube. He doesnt swallow so he has to be sucktioned alot. We have spent the past eight months pretty much living in.a hospital. We are.making the best of the time he.is here. I thought i would share Chandlers story as well. I am so sorry for your loss. I wish you the best!!

I am sorry for your loss. I personally have lost two children myself to a rare disease and I hate to say this because now one should have to feel this pain, but I know what you are all going thru. Cherish the days that you were blessed with her and her infectious smile. Remember the fun and all the wonderful moments you had with her everday. I will pray that your pain you feel now is replaced with happy rememberance of your beautiful daughter. God Bless you all and Avery is now an Angel that will forever watch over you from a distance until you can all be with each other again.

I went and picked up my sleeping 17 month old daughter out of her crib last night and held her for the longest time after reading about Avery's death. Life is such a miracle - thank for sharing Avery's with us.

What remarkable parents you guys are, I saw Avery's story on Fox News last week and started keeping with her bucket list everyday since, yesterday I was unable to check it. So this morning I came to work and her blog was my first thing to check. I wept for her and I wept for you as parents. I have a son who is 15 months old and I cannot imagine loosing him. What a testament to your faith that you two were able to do this blog and love your daughter knowing what her fate would ultimately be. I am so very sorry for your loss, but I found a new organization that I will be now donating to. Words cannot express how truley great you two as parents are I am so very sorry for your loss, she was a beautiful baby girl and you should be very proud. Thank You for sharing her story with a guy in a small town in Oklahoma. May God ease your grief and Bless You Abundantly through this time.

God Bless You, Avery, and you're family. What wonderful parents. Life is such a blessing. happy to see that you're life was cherished by your parents and the rest of your family! What a wonderful outlook in a trying situation. Rest in peace and love, baby girl! May God be with the ones that loved you. You will be missed.

I am so sorry to hear that Avery left this earth so soon. You have my prayers - I pray that you will be able to find comfort, and that you will be able to continue with the wonderful work you have started because of Avery. What a precious girl <3

I found out about this blog I think a week after you started it. What a wonderful read and the spirit you brought out of that little girl to share with the world was such a blessing to me. Today, I cried as if I lost a family member. I am a mom of 4 and I can't imagine losing any of them. From one Mommie to another, I am so very sorry for your loss. You and your family will be in our prayers. I can only hope that my children have the positive impact that your baby girl had on the world. God bless you for sharing her with us.

I have never heard of SMA until yesterday. I have a 10 month old and can't imagine what you're going through. Your story touched me and I will never forget your daughter, Avery, and what you did for her and yourselves during this journey! I will spread the word and fight for your family and all others that have been affected by this. I made a donation on Avery's behalf this morning. I wish your family so much love and BRavery through this time. Love, Amanda, Marcos and Quinn Ortiz

I am still so amazed and inspired by Avery. Although her time here was short her influence and story will be long lasting. I am just so happy that her time was well spent with loved ones, making memories, but most of all making an impact on those who have taken the time to read her story. May God bless you at this time.

Even though your little love has gone to heaven, her light continues to shine and inspire. THANK YOU for sharing your story, her journey and may you continue to feel her love and the love of your family. She is a beautiful little girl, and you are beautiful people for giving her what you gave her :) Jenny Blackbird

Made a donation in Avery's name. Hopefully my son, born 11/7/11, will see a cure for SMA during his lifetime.

I know that you will probably not have the time to read the thousands of comments that have now come to your blog, but my husband and I have personally prayed for your family. I hope to join you in spreading Avery's story, and help the fight for SMA. Your family has inspired an incredible amount of people in such a short time, and I KNOW that Avery is proud of that in heaven.

I just wanted to let you know that I donated to Sophia's Cure just a few minutes ago. I saw how much Avery's page has brought in thus far, and I'm so happy to have been able to donate- even thought it was only a small amount. I hope it goes to her page. I hope it gets matched and that we can find a cure. I'm thinking of you both- sending you thoughts of peacr, stregnth, and hope.

I just your story. I am so sorry for your loss. Here is a link to another family that loss their little boy last year. https://www.facebook.com/wane15?ref=ts#!/pages/Pray-For-Xander-Powers/208650332513928?sk=info

Love and hope from Melbourne, Florida. Surely Avery's short, tiny life brought your family incredible joy. God knows what he is doing, even in those moments when we don't understand.

Thank you for sharing her with all of us. She has certainly touched my life. I cried for her this morning, but will celebrate her life in the hopes there will be a cure for her disease. God bless your family.

Wow that is great news, a cure would be fabulous. My neice has SMA and her brother passed away from it too. So sorry for the loss of your sweet baby. May your memories help you through this heartache. Prayers and hugs sent your way!

Dear Ones ~ We just learned now about your Avery.So sad that she went to sleep too soon! So sad for you!In my 64 years of life I have learned that our Heavenly Father has a natural remedy to heal us if (IF!) we only seek it out! (I was near death as a baby and young child.) Also, there is prayer with anointing the sick with oil and they will recover, James 5:14. Sadly, most medical doctors don't seem to know about these! For Avery's sake NOW the BEST thing that you can do for her eternally is believe in the Father Yahweh and His Son Yahshua! HalleluYah!With Our Prayers For Your Salvation ~ Jayna Dinnyes

I've told everyone I know about Avery's story. As I tell it, I smile through my tears. What you have done for this baby is incredible. In the six short months she had on earth, she lead such a full, beautiful, happy life. You and your wife are inspiring.

I read through all of Avery's blog and am touched by how much love and care you gave your daughter. SMA never stood a chance of taking her smile away because you loved her so much and did such a wonderful job.You gave Avery enough love to cover a lifetime in the short time she was with you.

For the future: continue your work to support SMA research and I hope you have children in the future because you will do such an amazing job with them!Jeremy Landrith jlrith@gmail.com

I saw your story a few days ago and have just had the strength to read it...but of course I still cried. I have an eight month old and even though its frustrating sometimes, I am thankful every day that I have her. I could never imagine going through this. Babies are precious and it's awful to hear at this young of age she had to go through this. She had to go through too much, but it sounded and looked like she had the greatest parents. She was very lucky to have such a patient family that loved her dearly. You have truely touched me with this story and as I type this I continue to get watery eyes. Thank you for sharing and i hope you all find peace. Like you said babies are pure and innocent and I am sorry you and anyone else who has gone through SMA or any other awful disease like it. Thank you once again for touching so many lives. It is amazing what babies can do.

I heard about little Avery from my childhood friend Candace Newhouse(I believe she teaches with your wife), my heart was aching for you all when I heard of her passing on but then I remembered, Avery served her purpose!!! I am totally aware of SMA and will continue to share with all my friends in her memory!! You are both AMAZING parents and your strength will carry you through! Always thinking about Baby Avery and her parents:)

Hello Mike & Laura. I am so sorry for your loss. i followed Avery's blog and I was so inspired by your positive view on how to enjoy her life rather than dwell on the inevitable. I wanted to share this small story with you..I want you & Avery to know that she touched so many lives. I had written to Buster Posey (Catcher for the San Francisco Giants)... and I used Avery's Ellen letter (but changed some of the verbage) to add "Attending a Giants Game" for her bucket list. I only sent it last week...and today I receive an email grom Amy G. the commentator for the Giants regarding fulfilling this item on Avery's Bucket list and awareness to SMA. I'm hoping that when you are ready to continue your plight...yoy will contact the SF Giants. They are such a great organization...and all the players really do so much for the community and for children and families. I pray that the Lord bless you both and that you get through these difficult times. Your Little Angel Avery will be watching you..so keep her bucket list going.God Blesssincerely,Florence AmadorSan Francisco CA

Hello Mike & Laura. I am so sorry for your loss. i followed Avery's blog and I was so inspired by your positive view on how to enjoy her life rather than dwell on the inevitable. I wanted to share this small story with you..I want you & Avery to know that she touched so many lives. I had written to Buster Posey (Catcher for the San Francisco Giants)... and I used Avery's Ellen letter (but changed some of the verbage) to add "Attending a Giants Game" for her bucket list. I only sent it last week...and today I receive an email grom Amy G. the commentator for the Giants regarding fulfilling this item on Avery's Bucket list and awareness to SMA. I'm hoping that when you are ready to continue your plight...yoy will contact the SF Giants. They are such a great organization...and all the players really do so much for the community and for children and families. I pray that the Lord bless you both and that you get through these difficult times. Your Little Angel Avery will be watching you..so keep her bucket list going.God Blesssincerely,Florence AmadorSan Francisco CA

Thank you Avery for sharing with all of us your story about SMA and for showing us how to live life to the fullest. I fell in love with your beautiful smile the moment I saw you and I have enjoyed every moment reading about all of your fun adventures with your mommy and daddy. We are forever inspired by all the amazing things you and your mommy and daddy have done. Keep smiling baby Avery because you have made a huge difference in our life and no doubt to the rest of the world as well.

I have read every one of Ms. Avery's inspiring posts, and my heart broke reading about her passing. Although we don't know why our heavenly father takes angels so early from this earth, I hope you find some comfort in the fact that she has brought so much awareness to people about SMA! My wonderful fiance and I are getting married in July and because of Ms. Avery's blog we are both getting tested to see if we are carriers of SMA before we start trying to have children. Neither of us had heard of SMA before reading this. Thank you for teaching us about this.

My daughter was born 4/30/2012 @ 3:32pm. Even though I have a 5 year old son I had no idea about this disease. I greatly appreciate the fact that you are bringing it into the light of the mothers and fathers worldwide. I am so sorry for your loss. Prayers and love are going out to your family and friends.

God sends us all to Earth with a mission. For most of us, it takes an entire lifetime to complete before we are rewarded with our trip back to Heaven. For others, that mission is completed in a heartbeat. Avery did more in her five and a half months on this earth that most of us ever will in 80 or 90 years. She has returned to the loving arms of God and is now enjoying reaping the rewards of all her hard work. Avery is playing with the angels, enjoying those new wings, for now she is the brightes angel in the Heavens.

God Bless you for sharing your precious angel with us and helping to raise awareness for SMA. Avery could not have been blessed with better parents...you realize God hand picked you because He knew how you would share her with the world.

Thank you for sharing your beautiful girl with us. Your story has made me a better person and a better mother. God bless you. I will carry you and yours in my heart forever. I have made a donation through Sophia's Cure, and until there is a cure for SMA, I intend to honor Avery every year on her birthday with a donation to Fight SMA.

I am so sorry for your loss. My heart breaks for you and your family. I think we need to help cross off everything from Avery's list. Spread the word and lets help honour Avery's memory by finishing her bucket list for her. By helping finish her bucketlist we can help spread awareness of this terrible disease and hopefully a cure can be found. When you are doing something from the list hold up Avery's name and SMA and send it to the Avery's bucketlist site on facebook. Lets show her family how many lives little Avery touched. She was loved. Spread the word and lets show the true meaning of love and help spread awareness of SMA.

I only heard Avery's story last week and was very saddened to hear of her passing. Thank you for sharing your story and allowing us to be a part of Avery's life. My thoughts and prayers are with you and your family while you struggle through this very difficult time.

I just want to say you all are a real inspiration to me and I will never ever forget baby avery i have kids myself and if something like this happened or if anything ever happens at all I hope i can have the courage that you all have had through it all to make the last moments the best because i just dont think i can do it. she is now my hero and i will never forget her and i will be sharing her story with everyone i know. thank you for being such an inspiration to all of us

RIP baby Avery....I will never ever forget you or your story. I am going to try and start my own family and i never heard of SMA...after i started reading your blog i asked my doctor for myself and Fiance to be screened. So thank you for opening my eyes to this. I am so sorry you had such little time here on earth with your parents, family and friends but know that you had a huge impact on the lives of many. You truly are an insipration and a newly winged angel. To Avery's parents...my heart goes out to you both. Thank you for sharing your story with all of us...you are both so amazing. you will be in my prayers and may you find comfort in knowing that Avery is now in a better place...no more pain and one more angel to watch over you both.

I am so sorry for your loss. I had tears reading your story. It just broke my heart. Avery's story touched me . Avery had touched the world and me too. Thankyou and god bless you and your family. God Bless little girl, rest in peace .

Avery!! You are such an inspiration to me. You will be missed so much you will forever be in everyones hearts. Thanks to you many people will have awareness of SMA and will raise money for research to help children!! thank you for sharing baby Averys story it truly touched me <3

Even though we cannot see her, she will always be in our hearts. No matter how far away. And even though this makes no sense, Avery was a great blessing in our lives. I read her blog a few days ago and instantly loved this girl. Not only did she have the same birthday as me, we share a name too. I can honestly say you don't know how many times I've thought about her the last few days. Thank you Jesus that you didn't let SMA take her angelic smile away.

Such a short life, but wow, what a mark Avery has left upon us still here. Thank you for sharing your story and so eloquently! I will continue to share it with others. May God bless you now and always.

I just want to say thank you to your family for creating this blog and bringing awareness to SMA. Im 17 weeks along with my first child, and we just found out shes is a girl, her name will be Claire. I would have never known about SMA unless it was for sweet Avery's blog. Your sweet girl's life was such a blessing, and now her legacy will be an even BIGGER one!!! Love and prayers to your family.

I think you all have done a great job with trying to make people aware of SMA. I have 5 children of my own, luckily all healthy (((knock on wood))) and I could not imagine anything you all have gone through or are feeling. You both are awesome parents and will continue to be!! prayers to you and your family!

I stumbled across Avery's blog a few weeks ago and fell in love. I have a seven month old and I cannot imagine watching her enjoy life knowing it was going to be so short. I think what you have done here is an amazing tribute to her and a wonderful way to spread the word about SMA. I wish your family the best as you move forward after your loss. She was a special little girl!

Little Avery if you only knew how many lives you have touched. I first heard about your story on 104.1 KRBE as I am also a Houston native. I can't begin to imagine how your parents are feeling right now not having you hear but i know they will never let you be forgotten. We will definitely bring awareness for you little angel. Wrote to Ellen this mornign, and even though it saddens me that you were not able to dance with Ellen she definitely knows who you are. Keep on smiling little angel. You have amazing parents!

Avery, You have changed my life. I love you with all my heart and I am going to miss reading about all your firsts. But knowing that you are in Heaven moving your little body and still smiling playing alongside my baby girl I misscarried puts me a little at ease. I still cry for your parents loss and I will continue to pray for your family.

I never personally met her, but I'm sure I will never forget her. Avery's short life will no doubt impact the lives of thousands of people for the good in the future. Most people who live to be a hundred can't say that.

Oh, Canahuati family, my heart just aches for you. I just started reading your blog on Friday, and Avery has been in my thoughts ever since. I am so saddened by her passing, and please know that she touched many, many, many hearts! I have not stopped sharing your story since Friday, and I won't for a long time. She is God's special Angel! And as small and young as she was, she did God's goodwork in her own little way. That smile of hers... is so precious. It just melts my heart. God Bless you and little Avery!

Just discovering this blog, and so sorry to hear of your loss. My 10 month old daughter is also affected by a rare disease. I have learned so much about the world of rare diseases during the last 8 months (since she was diagnosed). You little girl will be missed, not only by her parents, but by many others whose lives she has touched in promoteing awareness.

Thank you so much for sharing Avery's and your story! Nearly one year ago on May 6, 2011, our son, Dylan, received his diagnosis of SMA Type 1. This past year has been spent making sure he was safely nourished, had proper respiratory support and was comfortable. While he has had some nice experiences along the way, we have fallen short of what we could be doing to enrich his life--and that is changing today. Your wisdom and passion for what is truly important has inspired us to create our own list for Dylan! I cannot imagine what it must be like to lose her, but please know that your daughter's story has changed so many lives for the better, including our son's and ours.

I don't know what to say but I feel compelled to leave a comment. I first started reading this blog 4 or 5 days ago and I absolutely fell in love with Avery. She was so beautiful and so amazing for being able to ave such a great smile despite her illness. I have cried so much since I learned of her passing. I've had a soft spot in my heart for babies forever but there was something special about Avery, I was really hoping that by some miracle she would pull through this and prove all the doctors wrong. And while things like this make me question God, I do know that he had a beautiful new angel with him. She is no longer sick and that is somewhat comforting. I'm crying my eyes out while I type this, I can only imagine how hard it would be if I had know her. I pray that her family can have the strength to make it through this immensely difficult time and keep up the good work raising awareness of this disease. I only wish that I had money to donate to the research, I don't though. I hope there are people who are financially better of that me who have been touched by her story and are able to donate. God bless sweet baby girl and may you fly with the angles.

To begin with let me say my prayers go out to the family. Like you guys I lost two grandchildren from sma. Eric we didnt know much about it hadnt ever heard of it so we did not know what to expect. Eric give us such joy he lived 8 months. Then Ali bug come along a few months later and she appeared to be healthy but it wasnt ment to be she started having signs of the sma. Our hearts was broke to know she had it too. She was tested and on Christmas day we found out she had it. So we enjoyed every little minute with her she lived 9 months. What you guys done with little Avery was and still is amazing i really look up to you that you could do this for her and hundreds of others with sma. I must say that in our story we have two grandsons that are healthy from the same parents that lost the two. Remember God is always with you and we are too .

My husband and I are truly sorry for your loss, and it feels like our loss too; we learned about Avery's story over the weekend, and we were very sad to hear on Monday that your beautiful angel had passed. We are expecting a little girl in July, and we feel that yout story has touch us and inspired us to enjoy every second of our little girl's life just like you did. Thanks for showing to the world that everything is possible, and every minute counts.

I know ive never met you Avery, but ive been following your story, and my promise to you is to spread the word and help raise awareness and funding so we can all win the fight against SMA. You have made such an impact on so many, your an amazing and wonderful little girl with amazing and strong parents. You are already loved and missed by so many!

Words cannot express how sorry I am for your loss. I was so inspired by your story and your desire to make a positive impact with sweet Avery's life. Your courage and love for your child transcends through your blog and I remain heartbroken at the knowledge of her loss. In her honor and to help increase awareness about SMA, there is a small group of us on Facebook (that is growing by the second, made up of SMAns from all over the country) that are trying to promote INTERNATIONAL IVORY FOR AVERY DAY on May 11th (in honor of what would have been her 6 month birthday). We hope that you will share our plight so that Avery can cross off "have one million people all over the world wear Ivory in my honor". God bless you and that precious angel. You can find our event at https://www.facebook.com/events/132930736830750/133044460152711/?notif_t=plan_mall_activity

My heart continues to ache for you. i just wanted to say Avery was mentioned on ellen's Facebook page. i continue to pray you and your family find strength during this difficult time i hope your mission continues to bring awareness to sma. thank you once again for sharing your special angel with us. she truly touched my heart!

I am deeply sorry for your loss, and completely inspired by your love and dedication to Avery and the cause to help other children. I have introduced Avery to my young son Lucas last night, and I am going to share bits of Avery's story as the time goes. He will learn about her bucket list, and hope one day we can help cross out some of the items on the list - in honor of Avery.

I am so sorry for your loss. You are truly inspiring. Many people would have taken a SMA diagnosis very differently than you did. You took it and decided not to let it get the best of you or Avery. I have two healthy children and honestly sometimes take that for granted. Your story opened my eyes. Thank you for that and bringing awareness to SMA to help others.

I'm at a loss for words…I read about Avery's story on CNN Monday morning and found out today she died; my heart aches for you and your family. Thank you for letting us all meet Avery and teaching us about SMA. Your little angel has done so much in her 5 months of life, more than some people do in a lifetime. Avery will live on in her message, thank you beautiful girl!

Thank you for sharing Avery in such a unique and special way with the rest of the world and bringing SMA to the attention of many like myself. Through your blog, our family has become emotionally attached to yours, as you wrote with such humor, wit and through pure love for your child and a desire to help others. There have been times when our family has been moved by something and times when we have been moved by something to change and this is what your blog has done for us. We posted it to our facebooks, as we are in positions where we deal with a variety of people ( I myself, am a preschool teacher) and asked others to read this work of art and legacy you created. We are contributing to the cause, as well, and are encouraging others to do the same. I was in awe, when first coming across your entries, and immediately thought, Ellen would love this couple, as she is what I turn on, when I need a smile, which is exactly what you brought to us, though , believe me, we shed many tears as we smiled. Avery was a gift from God sent for a purpose and God chose the most perfect parents to carry on this purpose. What an inspiration you have become. Thank you for writing this blog with so many references we could relate to to put us in a place we could easily connect with you and be educated during this process. You are an amazing, hilarious, adorable, fun couple. How blessed those who have met you must be. You will be in our prayers and we will be waiting to see you on Ellen as we are praying that happens in the near future:) You are creating a team all over the world who are going to help you win a victory in Avery's name for SMA. You're in our hearts and prayers.

Words could never begin to express how sorry I am for your loss. How amazingly unselfish for the three of you to share this journey with the world. The gift you gave to each and every person who read this blog and to allow us into your world and to love your daughter along side you. Who knew that such a young child could inspire so many to live each and every day to the fullest!The fact that as her parents, you did not wallow in misery and anger over the situation you were given, but, to be so determined to make sure that she lived EVERY passing second of her life knowing nothing but love and happiness (if we were all only so lucky!). Not only are the two of you wonderful parents, but, simply two of the most amazing human beings to ever grace this planet!This blog will do so much more than just bring awareness to SMA, it has also taught us all to be better people, parents, friends ect. I hope you can comprehend just what an impact you sweet little girl has had on millions of people and she will live on in the lives she has touched!

I just saw on Facebook that Ellen has a post about "Saying Goodbye to Avery". I am so happy to see that she saw through all our emails what a wonderful little girl Avery was and how fantastic her family is. I am still amazed at how much I miss her - even though I only knew her through her blogs.

I hope everyone in Avery's family is doing well. Please take care of yourselves. You had one great daughter! She will be remembered by many, many people - me included.

Death Sucks for those left behind to grieve. I am so sorry for your lost. I made a small donation because it makes me feel so good to be invited to contribution to a family who took unfathomable circumstances and are making such an amazing difference in the world.

I've had Avery on the brain ever since I found out about this blog last week. Her little smile and sweet spirit pop up in my thoughts all day long. I was so sad to hear about her death, and am grieving for your loss. So touched by her life, and inspired by you as parents. May God be with in you in your grief and give you peace beyond understanding.

I THANK YOU FOR THE BEAUTIFUL THOUGHTS OF YOUR HEART --THAT IS TENDER TO SHARE FEELINGS THAT ARE SO DEAR TO YOU- WE HAVE A GRANDSON 3YEARS OLD AND A GRANDAUGHTER 5 YEARS OLD--A BROTHER AND SISTER, AND THAT HAVE SMA TYPE 2 --WE TRULY FEEL OF YOUR LOVE FOR AVERY AND ARE MOTIVATED TO HELP OUR OWN GRANDCHILDREN (ALONG WITH THEIR PARENTS AND SIBLINGS--TOO) TO COMPLETE LONG LISTS (BUCKET LISTS)...WE LOVE THEM SO DEARLY...AND THANK YOU FOR YOUR EXAMPLE IN SO MANY WAYS

I heard about your blog just recently, the day you lost Avery. Just like you, I had never heard of SMA. I can't even imagine the pain you and your wife are going through right now. I wish I could say something that would take that pain away, but I know that nothing I say can fill thhe hole in your heart. Avery seemed like a very special girl and I wish I could have met her. I hope you hold on to the fact that your little girl was a ray of light for so many people. In just 5 months, that little girl touched more hearts that most people will touch in their lifetimes. That is truly a remarkable thing. I wish you the best of happiness in your future, and know that you will find it again. Just remember, that even in death, Avery is a light that won't ever burn out. I will give what I can to SMA and help spread the word.

i will never forget avery. i told my two boy(ages 4 and 7) about avery a week ago and we were cheering her on as she completed things on her bucket list. when i told my older son that avery passed on monday, he said, "i'm going to become a doctor when i grow up and find a cure for sma." may god hold you up during this time. you are amazing parents and i know that avery would be so proud of you as much as you are proud of her. love, cristina

I hope you will continue on with Avery's blog and mission. One thing I learned after my own daughter died, is that these children came into our lives as our teachers, and they continue to teach even after they have left this world. It's been 12 years since my daughter died at age 16 and I'm still learning important lessons from her. I know since you created this blog and posted it as it was from Avery's viewpoint (which I have no doubt that it really was), that she will continue to communicate with you. These will come to you as signs, dreams and messages from other people. Stay open to possibilities and Avery will continue to live on. I know it's going to be so hard to live without her physical presence in your life, it still is hard for me after 12 years. But time truly does heal wounds, especially if/when you know that she came to you for a reason and that she and the reason is still with you, and will never really leave you. Thoughts, prayers and blessings for your family.

I don't have the words to express what i felt reading your blog but i just wanted to say hi. You have such wonderful parents that made your time here so special, and now they have picture after picture of all the wonderful times they had with you. Your bucket list was so precious and filled with so many meaningful things. I would have loved to be one of your 1000 smiles goal. My thoughts and prayers will be with your family. Thanks also for spreading the word about SMA, you did a good job and because of you word will continue to spread. Your have touched many lives

Wow,I said a prayer for Avery just the other day.I don't have a job,and have been looking for sometime.But I promises as soon as I get a job.This will be the first bill I pay,this has touch me so deep,and what is odd is,I've never met your child are your family, but as of today I feel like I lost my own daughter. I do have one and she is my only girl,so as a father I feel you and your wifes pain.Last thing I want to say is,Someone said something that was so racist to me the other day when I first read about the bucket list.I will not relive that statement with you,but I will say I learn alot about myself and alot about the so called friends I used to have.Im an african american male who just learn that at the end of the day we are all the same color on the inside,its just morals that separate us as human. God speed,may all of heavens army watch over you and your wife.please let me know by email how to donate when I have the money to do so,and give me more info on this disease. At tyronelloyd@clearwire.net. love you guys even if I don't know you yet!!

Your family is a beautiful example of positive action. Tell the world about Avery, and educate people about SMA. I am so sorry for your loss, but know you have made a difference through your experience and through your grief.

God Bless little Avery and all of her family struggling with her loss. She impacted so many people with her beautiful toothless smile. I will miss the pictures and updates on her progress. I cant even begin to imagine how any family feels going through something like this. I pray there's a cure for this silent killer in the very near future.

As the parent of a daughter who passed before [my preference for] her time, I can attest that some people are put on this earth merely to touch the lives of a few people in positive ways before their energy transforms into a wave which departs for other shores... no doubt that Avery Lynn touched a great many lives on this past journey, peace and love =)﻿

Life will always prove to have a greater advantage over who you are and who you aspire to be. Thank you for sharing Baby Avery's life with us, she has truly touched the lives of my family and friends. Bless you and your family for showing no fear in the eyes of Avery and letting her live to the fullest, and taking the time to not only care for your little angel but as well as the rest of the world by sharing her story and informing us all of SMA. You are wonderful and inspiring people and because of you Avery's legacy will live on forever. Thank you again, you and your family are in my prayers.

Avery was really blessed to have such a strong family to support her through everything. She now walks with God and the rest or her family. She may be gone but her legacy will still live on, she has helped so many people find out about SMA with her blog and all other types of mead. I was blessed because my ob/gyn tested for SMA and other deficiencies’; at that time we didn’t even know we were able to test for things like that. Your daughter Avery was born 11 days before our little one. and I must say your family must be the strongest family I have heard of in a long time I only pray that myself and my family can be as strong as your family in such an inspirational ways as you all. Ps. I am so glad her smile was never taken, I’m sure that that was what kepted you going each day.

I'm really sorry to hear that you beautiful girl had passed away. Reading your blog it really brings me back the memories of me being pregnant and have no choice but to remove the baby, as my boyfriend and me are really not able to afford a baby, financially. She's so pretty and really very strong. Your family is such a happy family, even when i dont know you guys in person. Thanks for letting me to know about this illness.

I am so very sorry for the loss of your beautiful daughter. She was so lucky to have parents like you. I wanted to tell you that it never really occurred to me to have genetic testing or anything, but I definitely plan to when we are ready to start thinking about having kids. So, thank you for sharing your story.

I wrote a short memoir in Memory of Little Avery on my blog, Joys of Motherhood. Overall thank you, and God bless you, and may we help in reaching those whom are facing what you have faced at this time, Peace,

I can't stop thinking about your family and what a wonderful gift you gave your daughter, and in return what a wonderful gift she is giving all of those affected by SMA. I think about Avery a lot through the day and sometimes I cry and sometimes I smile thinking about her bad hair day. I hope you can take solace knowing that she touched so many lives and how much awareness she is bringing to SMA. She had a beautiful smile and she lived more in one month than most people live in a year. I commend your family for your strength and defining how Avery lived with SMA and not how SMA defined her. This brave little girl and your family are loved by so many who hold you all in our thoughts and prayers.

OH my goodness, I spent about 3 hours reading every single post, looking at every single picture and watching every single video about precious little Avery and this last post made me bawl. This blog is so special and I am glad that you posted about little Avery's life. I am 11 weeks pregnant with my first and my next doctors appointment I am going to ask about SMA. Thank you for informing me about it through Avery's life. I am sorry for your loss, she's absolutely beautiful.

How precious that your baby was spending time with you, smiling and living fully right up until she passed away. She certainly knew she was loved. You both made it about her, not yourselves...a very hard but loving and unselfish thing to do. I have taken a great deal of encouragement from Avery's blog, have prayed for her and your family multiple times a day since beginning to read it a few weeks ago. Thank you for bringing such a sweet gift into the world and sharing her with others.

My heart goes out to your family. It's never an easy thing to see your child suffer and pass away. It's been 5 years since our little Ruby was taken home from us. She was only 21 months old and so many things I wish I had done with her. If you ever need any support, please let me know. I can be reached through her blog Ruby's Heavenly Treasures rubysht.blogspot.com You're going to have some really rough days ahead of you and seek out as much support as you can. Do anything you can to remember your little girl and know that EVERY emotion you are going through IS normal and not to hold back any of them. (((((hugs))))) Dee

I started following Avery's blog after seeing the article on Fox News and was so moved by this beautiful baby and her loving parents. Following such devastating news, you made a conscious choice to make sure that Avery would only know love and all of the other positive things that life has to offer. I was so sad to hear of her passing on Monday and have cried several times thinking of your loss. Know that you and Avery have educated MANY people about SMA and have also inspired many of us to spend better quality time with our kids. She was one very loved baby and will always be remembered.

I am so sorry for your loss. I am so saddened by Avery's story and it has made me realize that I should be grateful for every moment I have with my own daughter and not take anything for granted. I've visited this blog every day this week to look at her pictures and reflect on the life she lived. I try to examine the situation from the perspective of you the parents and Avery herself and I can't begin to imagine the pain you feel or what you've gone through. Babies should not have to deal with these types of issues, they have no idea what is going on or what lies ahead of them :( I hope you find peace and can smile at impact she's had on others around her and across the world. I donated in her name today and encouraged all my friends to do the same. Cherish the memories you made with her and continue to spread the word of her fight. Rest in peace beautiful Avery, the world is hurting without you but you'll never be forgotten.

Miss Avery so much. And I didn't know her. She reminds me of my own 5 month old daughter Freya, and the grief I feel in empathy for your family is overwhelming. I pray that in the days ahead both you and Laura are able to hold tight to eachother and the take solace in the fact that love will forever bind your family together -- keeping your daughter's memory alive, no matter what this world can do.

One of the things that I had learned since I was child is that God (Jehovah) is the promise of no more pain, no more sickness, no more suffering... no more death.

Have faith that one day you will hug your little precious girl Avery. A great event is coming where all our love ones will arise from death. All those innocents lost by sickness, by war and by evil things will be recovered. Have faith and be happy in His Promise. Our great loving Father (Jehovah) wants that we live in hapinness. Have faith in His promise, because we are His children and we all are a big family. He also wants the best for all of us.

I am also a father of a very beautiful girl named Maya. She was born on Feb-09-2011. I have faith that can we can meet in a world where all the past things had gone. That my little Maya and your little Avery can also be friends.

When a read about your quick update, I cried and after that I prayed for you and Avery. Also, like you said, for all Avery little friends. My prayers went for all of you.

I am from Matamoros, Mexico. Please receive all my prayers and my blessings.

I was inspired by avery's story.She was a beautiful little girl and she was a fighter. I will never forget and I will always remember the date of april 30, 2012. My little boy had his 2nd birthday and you lost your little one. On this day I will celebrate for both of them Avery will always be in my heart. You are great parents and I admire all that you done for her. God bless all of you.

Thank you so much for educating everyone about SMA. I am spreading the word in Avery's name. She is a beautiful girl, and God used her for so much! She is home with our Father in Heaven! How awesome for her! Please know that you (Michael and Laura) are in my prayers, and I pray for strength and the continuation of Avery's work. May God continue to bless you both!

My heart aches for you. I have been following your blog daily and was devastated to discover that Avery has passed. As a mother of a daughter born on 11/8/11, I feel so connected to you and Avery. She seemed like such a joy to you and your family, as my daughter is to me. Ever with her diagnosis, Avery's passing seems so sudden and surreal. I am so deeply, truly sorry for your loss. I admire you for sharing your sweet Avery and her story with me, and for reminding me how truly precious life is. Avery is so loved and will be terribly missed. I will not forget her.

There was a deep sadness when I heard/read that Avery had passed. It didn't take much to have this little blessing wrap her heart around mine and take me gently on her journey through life - to see the world around her through her eyes and to experience the miracles, the shared laughter all the while rooting for her to kick her legs in the water and cheering at the first pitch. She is a scrumptious little morsel of pure sweetness that has made me look past the mundane and enjoy a different view.

I am the mother of the little girl whose dress Avery loved. It was a gift and I was trying to get another one like that for Avery. She grew her wings before I could do that. You are a remarkable family ,channeling your grief to help others. Thank you for sharing your precious daughter with the world.Love you all.

I pray for your little angel on the other side of the Atlantic, just as I pray for Chloe (8 months) who passed away last Monday as well. She was diagnosted with SMA when she was a couple of weeks old. The burrial ceremony was organised today at 1.00 pm. Needless to say the church was full. Kind regards from France

Our family just donated $25 to The Sophia's Cure foundation in honor of Avery. May God bless your family and all your future endeavors. Avery is most certainly smiling and dancing in heaven. Sending you love from Colorado.

Googling 'Averys Bucket List' results in about 17,500,000 returns - wow! You've walked this path in life with amazing grace. To check another item off Avery's Bucket List, go to http://www.songsoflove.org/ for Avery to have her very own song especially for her. Your love for your daughter is clearly felt through Avery's story and has made he world a better place.

You have shown amazing grace while walking this path in life. You are an awesome family with lots of love to share. the parents of a true angel. To cross another item off Avery's Bucket List, go to http://www.songsoflove.org/ and she can have a song written especially for and about her. Here's another item for Avery's list, help her be a big sister.

Avery and Your Parents, You have touched my heart so much. I have a three month old son and I can’t even imagine what you had to go through. You have been such an inspiration to all of us and I’m sure that because of you, the cure for SMA will be found. You have the best parents on earth and I admire them for what they have done. You made me realize how important is to smile and to not worry about little things. I will try to spread awareness about SMA, and make a donation every month in memory of your precious daughter. Rest In Peace Little Angel.

I am so sorry for you loss. My best friend went through the same thing but they lost their 3 month old from turner syndrome. I know it is very hard to handle but remember that she is no longer in pain and is happily watching you from heaven. My family is raising money towards Avery and will be donating soon.

I just wanted you to know that in the few days that I knew about Avery and read her story, my heart and mind has been and continues to be deeply touched. I pray for you and your family for peace and strength in this sad time. By sharing your angel with the world, you have shown what love truly is. And Avery showed us all how to live and embrace every day. Thank you.

My mother is a nurse for a 22 year old girl with SMA. She goes to college, works, is part of a sorority and is one of the strongest girls I know. Every year I donate to help raise awareness of SMA. I want to thank you for sharing your bucket list, memories, smiles and tears in order to bring public awareness to this. Thank you, Avery. You are very loved.

Sweet and brave Avery, you're gonna continue being an inspiration. My prayers are with your parents now, as well as with the doctors who will work on the cure for SMA, for your present and future friends to accomplish as many things on their bucket lists as you did. And all the ones you met and touched their hearts will continue spreading your voice, that's for sure, precious angel!!!

i never, ever comment on public blogs, but i felt so incredibly compelled to do so in this case that i had to trust in and follow my heart. i know that nothing i can say or do will help you nearly as much as i would like, but i just so wish that i had a magic wand to erase your pain. i want you to know that i found this blog on the 29th and made a promise to myself that i would share avery's story as far and wide as humanely possible. i felt like my own heart broke the very next day even though i know it's nothing compared to how your family must be feeling. but, i can PROMISE you that i WILL continue to share avery's story. i already made an appointment with my ob-gyn to get tested as well as to urge her to make that a routine practice within the clinic. i won't go into the details of my life, but i have had many heart-wrenching experiences and challenges lately and this story gives me a silver lining in one big way: in short, i will be able to reach many more people now than if my life had gone according to "plan." due to many factors i have to start grad school at least a year late; yet, i am going specifically for a master's and two licenses that all center around being able to help young children. the one i hope to turn into a career is a license as an early interventionist for infants through eight year olds and their families. i did not have ANY information about SMA a year ago, but now because of you i CAN and i WILL spread this story to a necessary group of people. trust me when i say that everyone in my program will learn about SMA and then i'll continue, and so will they, to disperse information to everyone in oregon and beyond. it's so many tragedies put together, but incredibly due to all of those, i can spread avery's story and information about SMA much farther than would have ever been possible for me previously. it actually makes me angry that i've studied pregnancy/birth/nursing/infants/infant development/child care/child psychology/special needs etc. etc. etc. and SMA has NEVER even been mentioned. this needs to be a topic within school curriculum: especially for people studying child psychology, early childhood development, and/or early childhood teaching among many other subjects. i'm very disappointed in myself for not knowing anything about this and it motivates me to help you change many of the ways in which this country runs. i am going to do everything i can to make sure parents get tested, if they wish, and that "we" (as early interventionists) add SMA to something we look for and assess as early as possible so that parents are informed and their children can get what the family unit decides is the best treatment option for them. i, along with SO MANY others, would not be able to do any of that without you. thank you so very much for sharing your story with the world. thank you for "giving us" avery. your family is a shining star of inspiration.

also, and i know this is quite small, but a certain very special song makes me think of someone in my life and now avery as well. i hope it brings you a little bit of comfort just as it has to me. type in this on youtube and i don't think you will be disappointed:Monique Vieras – You Will Never be Forgotten

with humble gratitude and love,alixps - i am sorry that i cannot capitalize properly at this time in my life even though i did try my best. it is due to an injury and in no way meant to be a sign of disrespect to your family.

I'm from Argentina, and I am the father of a teenager, I heard the news of his daughter, and I would bring you my love and tell them that you are the most wonderful parents and I met his daughter will always be his angel. Love was born with Avery should not ever let it die, and I hope to continue looking for another child that you can provide so much love and are an example and inspiration for many parents. From here I send a prayer to find the strength to continue the work which is the most wonderful family.hugs Walter

I'm from Argentina, and I am the father of a teenager, I heard the news of his daughter, and I would bring you my love and tell them that you are the most wonderful parents and I met his daughter will always be his angel. Love was born with Avery should not ever let it die, and I hope to continue looking for another child that you can provide so much love and are an example and inspiration for many parents. From here I send a prayer to find the strength to continue the work which is the most wonderful family.hugs Walter Vazquez

This has been one of the most touching life stories I have ever read. My heart breaks for all of Avery's friends and family. May the amazing memories of Avery bring you comfort during your times of sorrow. She and you both are truly an inspiration. I will share SMA to all that I can. Thank you for sharing your life events in order to bring awareness.

God knew exactly what he was doing when he placed Avery in your care. He chose the most special parents he could find, to love and nurture this sweet baby. I'm not sure you realize how extraordinary you are. I don't know how you've turned what would devastate most of us, into a warm, enchanting tale, of triumph over adversity.

But, what you have done, most of us, will never achieve in a lifetime, having lived many decades of earth. You shared with the world, at your most vulnerable time. A time when grief, anger, and disbelief, would overshadow any possible altruistic thoughts. You gave a face to a horrible disease. You took SMA from obscurity, to front page International headlines, making news all over the world.

Of course it helps that Avery's smile could illuminate the NY skyline. And that she just might be the most adorable baby, ever. We all fell in love with your amazingly beautiful, bundle of joy. How brilliant, that through your blog you have raised such awareness. Because of this, Avery will live on for many, many years. And SMA will no longer a disease, most of us had never heard of.

I also want to add, that although I am extremely sad to learn that Avery passed away so unexpectedly ... I am happy to know that she did not have to suffer through the debilitating process of this horrible disease. Not that this negates the tremendous grief I feel, in brevity of her time on earth.

I am so sorry for your loss. You are great parents and I thank you for raising awareness of SMA. My boyfriend and I are planning on getting married soon, and when we eventually decide to have children, I will be sure to make the doctors check for the SMA gene in both of us. I don't think I would have been able to handle this as well as you. You are all an inspiration, especially little Avery. God Bless You. God Bless Avery.

i have been reading averys list from the begging only stopping to give birth to my daughter.I named her Avery. your child has touched so many ppl it is nice to know we are all still one thing parents protecting our children.